[The role of the fetal medicine specialist in supporting couples who choose to continue a pregnancy despite a prenatal diagnosis of a lethal fetal condition].

OBJECTIVES

To explore the role of the fetal medicine specialist in supporting couples who choose to continue a pregnancy despite a prenatal diagnosis of a lethal fetal condition, through a local study and a literature review.

METHODS

A retrospective cohort study was conducted from 2018 to 2023 in the two prenatal diagnosis centres (CPDPN) of Marseille, including patients who continued a pregnancy resulting in a live birth despite a diagnosis of a lethal fetal condition. Data were extracted from the Viewpoint software. A narrative literature review was also conducted to identify factors influencing parental decision-making, the experiences of parents and healthcare providers, and current practices in perinatal palliative care.

RESULTS

Eleven patients were included. The most frequent diagnoses were congenital heart defects, chromosomal abnormalities, and cerebral or renal malformations. A consultation with a neonatologist was systematically offered. In 18% of cases, palliative care was provided at home. The average postnatal survival was 5 days. The literature review highlighted the importance of ethical, cultural, and emotional factors in parental decisions, as well as the lack of training among healthcare professionals for such support.

CONCLUSIONS

The fetal medicine specialist plays a pivotal role in coordinating care and preparing for a palliative approach. A structured, interdisciplinary, and individualised framework is essential to provide ethical, empathetic, and coherent support to couples facing these complex and emotionally charged situations.